“At birth Briley was diagnosed a four part congenital heart defect that required a open heart repair at 4 months old. We learned at 3 years old that her heart was starting to enlarge, in 2016 we were given a timeline of another repair in 5-8 years. So in Feb, of this year when Briley became noticeably pale we were not very concerned since Briley had a upcoming cardiology appointment. We assumed her heart repair would be pushed forward.
In April of 2018, Briley started a low grade fever nightly for about a week, along with became extremely tired, thirsty, and lost her appetite completey. We took her to her pediatrician who did some test and recommend we contact her cardiologist. After reviewing her heart we were given a good report and blood work was completed.
The next day we were given the diagnoses B-Cell High Risk Acute Lymphocytic Leukemia or ALL for short (which just so happened to be her brother Cooper's Birthday) We as a family were prepared for a heart repair but not cancer, and we were in complete shock. Briley was to be inpatient for 29 days at Children's Healthcare of Atlanta- Egleston, with the hopes to kill the Leukemia in her blood. Which was successful, but Briley was unable to celebrate with the rest of us because during treatment she ended up developing a very painful colon infection but due to the lack of white blood cells, it was undiagnosed for three weeks causing a high 14 day fever. Once the colitis was found and treated her fever stopped for 2 days.
On the morning of the third day, Briley spiked another high fever that stayed for 40 days. After 12 CT Scans, weekly ECK and X-Rays, a arm and lung biopsy, daily blood test, a full body bone scan, and efforts of many different specialist the cause of the fever was never found. Given the amount of time it is assumed that the fever was caused by mold, but no evidence ever was found. Once the fever stopped she was on a 48 hour watch and in June she was allowed to go home.
Currently she has weekly chemotherapy for the next year, will have monthly treatments for the two years following that, along with multiple treatment inpatient visits. With a total of 3 years of treatment followed by the heart repair that we have known about.
With our family residing in south Ga, more then 3 hours away from treatment and treatment being so lengthily we have relocated to the Atlanta area to help with the emotional and financial burden of this life changing event. Briley is also being homeschooled and not able to attend public school for her 2nd grade year. While all of these changes will benefit Briley and our family in the long run it has been a very emotionally difficult for all of us as a whole.”